Weekly Update

I figure if I'm going to slack off on the blog then the least I can do is post a weekly update on how I'm doing. 

• Health - My symptoms have slacked off this week.  However, one symptom flared with a vengeance the day after I stopped my medications.  This hasn't happened in such a long time that it caught me by surprise.  I woke Monday morning with a small sore throat.  I thought nothing of it and went on my day.  The next morning I awoke at 2am with my throat so sore that I couldn't swallow.  My thoughts immediately went to strep, but with strep - I get a delirious fever.  I checked my temperature and it was normal. I got up - to find something.  My magical mystery drops. I found them and took them and only needed the first kind Tuesday to Thursday.   I'm still on the 2nd one.  I'm not sure if I've ever talked about these drops so I might as well share now in case I haven't

•  The first bottle is called Bio Chlor Dox.   According to the manufacturer, "Bio-Chlor-Dox is a natural antibiotic that kills bacteria by supplying generous amounts of oxygen to anaerobes, which are organisms that do not require oxygen for growth and may even die in its presence. It is an effective antiviral, antibacterial and anti fungal product. By administrating Bio-Chlor-Dox, the immune system is assisted in carrying out the normal body process of defense against invading microorganisms, with little or no toxicity to normal tissues."  Basically what it means - is that this supplement provides a lot of oxygen to organisms that don't need oxygen and therefore might kill them.  Whenever I feel like I'm coming down with something, I run to this bottle of stuff.   For me, I typically do 5 drops under the tongue twice a day until I feel better.  If I catch it early enough, I can clear it up over one day.    However, in this case - I didn't take it on the first day of the sore throat so it took me three days to clear up the throat issue.  If I'm feeling especially nasty, I might bump it to 5 drops 3 times a day.  I also use it if I've been exposed to someone who is very sick.  I'm not sure if it's actually doing something or if I just think it will so it helps.  Either way, I do not care.  It helps.  

• The second is something I take when I get specific symptoms - (sore throat, itchy throat, itchy eyes - aka allergy symptoms) - It's Quercetin drops.  It is supposed to inhibit the release of histamine (aka a natural anti-histamine)  For me, it's beneficial because I don't get drowsy.  I squeeze up a dropper full and down the hatch it goes.  I take it a couple of times a day until the histamine reaction minimizes.  I also take it if I know it's allergy season and I want a little extra boost.  The unfortunate thing is that it seems very difficult to get.  So the last few times I've ordered it, I've been sent a message saying the place I order it from is out of stock.  I keep a check and finally last week I realized it appeared the place had some.  I ordered it, they took my payment and it's on the way!  So I'm thrilled.  I can take it like I need to instead of decreasing the time I take it. 

• Home - I've spent the last week really working on getting the house clean.  Since I had such bad back and leg pain the previous two weeks, I hadn't really done much in the terms of cleaning.  Since Wednesday was such a great day for me (minus the sore throat), I practically cleaned the entire downstairs of the house!  Fortunately, it hadn't really gotten that bad since I hadn't been able to move around much.

• Advocacy - haven't done much on the advocacy website, but there are a few support group meetings this weekend. I'll attend one of them because the other is too far away.  Also been talking a lot with others about May Lyme Awareness Month.  We have a few ideas for May, but have to get some things in order before we can announce them.  We'd hate to announce that we were doing something and then the thing fall through the cracks. 

• I hope everyone has a great week!

March Update

 I have little time to focus on the personal blog since my time is so focused on the advocacy website.   However, I wanted to update everyone with my favorite format.  Random Bullets!

• I had blood work done yesterday.  I've discussed this before, but I basically need to drink 3 liters of water (with about 2 ounces of Gatorade mixed into that 3 liters of water) in about 3 hours the morning of a blood draw in order to have a chance of a stick.  I woke at 6am and began my ritual and by 8:45, I had finished my 3 liters with 2 ounces of Gatorade.  I knew I hit my "sweet spot," when I drank a sip of water - had to urinate immediately - finished urinating - got up - drank another sip and immediately had to urinate again.  So, I packed up one more bottle of water and left. I signed in at 9:25 and walked out at 9:40.  This included, scanning my insurance and license (twice actually - gave her an old license with my old address on it and my old insurance) - and her trying to call my doctor's office to clarify what he wanted (but they were closed yesterday).  Seriously, one of the easiest blood draws I've ever had.  For one, she listened.   For two, she remembered me from the last time.

• Symptoms:  I began to have severe leg and ankle pain as my back pain finally eased off.  Go figure that I get one of one excruciating pain and get another.  My heating pad was my friend and finally today that pain has eased to be replaced with a sore throat.  I'm sure that my voice is probably a little hoarse (an occasional symptom I get),but I haven't needed to talk today yet. 

• Lyme Advocacy:  I must spend a few hours (3) at the minimum on advocacy and awareness things a day.  Today for example, I woke up with several things in mind and have already spend an hour and a half.  Although, I suspect I will continue off and on throughout the day. In general, I speak with at least one Lyme patient daily on the phone and at least 5 on the computer.  If I had a couple of dollars for each communication about Lyme or Lyme Awareness, I'd be able to pay for my treatments.  On occasion, I get "lymed out."  On those days, I take a respite either in the morning or the afternoon.  I rarely take a full day off from awareness. It's just too important to me.

Beat the Bite 5K

Fundraiser for Lyme Disease - I rarely flat out fund raise.  You will rarely hear me ask for money, but today I come to my readers (I know there aren't that many of you, but I ask none-the-less) for help.  I realized today that if all of my friends and family on facebook donated even $1 that I would collect almost $600 and that if each of those friends or family donated a generous $5 that it would be over $2800.  So today, I come to them and to you with my hand held out.

The other day I mentioned the 1st Annual Beat the Bite 5K and 1 Mile Fun Run.  It was right before my beach trip on Sunday when I first heard about this.  A friend of mine (huge advocate in NC) told me about it.  So I contacted the Beat the Bite founders and realized this:  They did not have Lyme Disease.  They created this organization and this 5K for their little sister.  I was blown away.  I invited them (all three sisters) to the beach, but only one was able to attend with such short notice.  I was able to get to know such a sweet woman and feel very blessed to now call her my friend.

This race is happening for two reasons.  The first is to raise awareness for Lyme Disease in North Carolina.  The second is to raise money so that we can continue to raise awareness for Lyme Disease in North Carolina.  On Beat the Bite website, you can register for the 5K or the 1 Mile fun run.  Register for the 5K for $25.00 or register for the 1 mile fun run for $10.  Don't live in the area or won't be able to attend.  That's okay.  You can sponsor someone to walk that otherwise wouldn't be able to do so.  Let me know and I can hook you up with a friend or two or twenty. 

Please help us continue to raise awareness in North Carolina.  Find all the information you need about the organization Beat the Bite & the 5K run at this website:  http://www.beatthebite.com .  If you donate or are going to the walk, let me know!  I'd love to meet you there or simply say thank you for your generosity.  We're trying to make this event HUGE!  So spread the word about Beat the Bite and the 5K Run.

PS.  You will see this post again before October. 

Under Fire

Physicians being under fire is not new in the Lyme literate world. I discovered this even before my  diagnosis.  When my husband and I were pursuing answers to this mysterious illness, we uncovered a doctor under investigation in North Carolina on our local news channel.  Shortly after my clinical Lyme diagnosis, we watched the documentary Under Our Skin (click to watch on HULU) including a Question & Answer session with the director of the film Andy Abrahams Wilson.  The documentary has several cases where Lyme Literate doctors were under fire during the time of filming.   This eye opening documentary shows how Lyme Literate doctors are scrutinized by others in the medical community which includes the medical board, insurance companies and other doctors.  

Skepticism is the questioning attitude towards knowledge, facts or opinions that are stated as facts.  Patients with Lyme Disease and doctors that treat chronic Lyme Disease face another problem in addition to the disease itself.  We face chronic skepticism.  As a patient, I am often questioned or criticized by the choices I make in regards to my treatments.   Physicians and nurses in the traditional medical community often raise their eye brows if I mention the words Lyme Disease.  People I know question whether I am choosing the right doctor and treatment because they've heard that Lyme Disease isn't this difficult to treat. My question is this:  How come every time I mention that I have Lyme Disease to someone they know someone  who "was very sick" or "almost died" from it if Lyme Disease is so rare?

It is such a puzzling phenomena that this illness doesn't seem to exist in the traditional medical community.  If doctors don't believe in the chronic form of Lyme Disease, why does the Red Cross have an official statement regarding blood donation?  The Red Cross states that they will accept persons with Lyme Disease if they were treated and the disease has been resolved and at least one year has passed.  However, those with the Chronic form of Lyme Disease are not eligible to donate (Official Red Cross Source). In addition, there are medical guidelines for joining the national bone marrow registry for Chronic Lyme Disease.  Fully recovered Lyme patients may register, but those with Chronic Lyme may not.(Official Bone Marrow Source)

If this chronic disease doesn't exist, then why is it listed that those with Chronic Lyme Disease can not donate blood or bone marrow?   It's common knowledge throughout the Lyme community that those with Lyme Disease should not register for organ donation in regards to transplantation. After intense research I have been unable to find an official statement regarding this; however, it seems to me that if scientists have found bacteria in the blood that is stored for donation (the Red Cross doesn't allow for donation for this reason) then it's shouldn't be a reasonable stretch that those with Chronic Lyme Disease should not donate their organs for risk of transmission.  It also seems to me that since our body are riddled with bacteria that it would compromise an already unhealthy individual. 

There is a disagreement between two sets of physicians. The physicians that are grouped with the Infectious Diseases Society of America (IDSA) state that Lyme is rare.  They suggest that Lyme only exists in the northern area of the United States of America and that Lyme does not need more than 28 days of antibiotics.  The physicians associated with the International Lyme and Associated Diseases Society (ILADS) have a vastly different point of view. The doctors are dedicated to the proper diagnosis and appropriate treatment of Lyme and its associated diseases (ILADS Source).  Did you realize that one tick bite can give more than one illness?  A few of these illnesses are Rocky Mountain Spotted Fever, Babesia and Bartonella, but there are many other tick borne diseases.  ILADS support physicians through research and education in order to advance the standard of care for Lyme and other tick borne diseases.  The two sides constantly butt heads.  One group benefits patients and the other group benefits insurance companies. 

The media spotlight of Lyme increases drastically in the spring time due to the rise of public awareness of ticks; however, the media speaks to physicians that have only been taught the basics of Lyme Disease.  The media just exposes the theories taught to them by IDSA trained physicians.   These are Lyme Disease myths, so to speak.  Generally, the public is told that Lyme is tough to get, but easy to treat.  They are told that a tick must be attached for several days in order for transmission to occur.  They also suggest that each patient with Lyme Disease will get a bulls eye rash.  The media doesn't even touch on the fact that the testing for Lyme Disease is inaccurate  The media outlets only have limited time to touch on Lyme Disease so the public is left uneducated when it comes to the endemic of the disease.  

The news stories on Lyme often infuriates Lyme patients. Media may share an "unusual" story on Lyme, but then in order not to cause widespread panic - they repeat that this is not the usual presentation and Lyme is hard to get and easy to treat.  The Lyme community maintains a level of excitement when hearing of mainstream media highlighting tick borne illnesses.   However, I always find myself a little leery as a viewer since I am typically disappointed with the lack of appropriate information.  They don't inform on other tick borne illnesses.  They also leave out recent theories that Lyme may be transmitted much quicker than previously thought, the inaccuracies of the blood tests and the Lyme communities thought that it may be transmitted by other vectors.  They rarely speak with true Lyme Literate Medical Doctors who can relay those facts or theories that Lyme patients presume are facts. 

The IDSA presents the community with guidelines for different diseases (IDSA Source).   The Center for Disease Control (CDC) follows the IDSA guidelines.  Insurance companies follow what the CDC thinks.  Therefore when doctors think and treat outside the IDSA Lyme Disease box, they are harassed by the traditional medical community.  Dr. Jemsek was the first physician I heard about being brought to the medical board regarding his treatment of Lyme Disease.  It was all over the news here in North Carolina.  Long story short is that Blue Cross Blue Shield (insurance company for those that do not know) did not think his treatments were appropriate for Lyme patients.  Unfortunately for his patients, our medical board agreed.  He lost his medical practice in North Carolina and subsequently suffered from bankruptcy trying to fight for his right to treat patients who chose his treatments.  He moved his medical practice to South Carolina and after a short while he was asked to leave.  He currently practices in Washington DC.

The only world renowned pediatric specialist in Lyme Disease, Dr. Jones, is another Lyme doctor under fire. Families come from all over the world to see Dr. Jones because of his mass knowledge of treating children with Lyme Disease.  His joy comes from making children better.  Yet, Dr. Jones had to fight for his right to treat.  Many physicians continue to fight for their right to treat.  Some of those had to give up practicing altogether which left their patients in dyer straights.  Currently, there is a new physician fighting for his right to treat.  This is scary my dear blog readers because, as I view it; the more LLMDs under fire, then the more difficult it is for those doctors that treat Chronic Lyme.  Dr. Jaller needs our support.  There was a petition going around on the internet, but it closed suddenly and no one else can sign it.  I must have signed it just in the nick of time.  After "signing," we could leave a note for those that read the petition.  My words were this:

"Physicians such as Dr. Jaller are needed in order to treat Chronic Lyme Disease and other tick borne illnesses. Too few practitioners are capable of properly diagnosing these tick borne illnesses. I was personally misdiagnosed for 12 years before being properly diagnosed in 2007 by a physician trained by ILADS. Dr. Jaller and Physicians like him should be commended, not condemned."

Friends, I urge you to support your Lyme Literate Physicians.  I encourage you to spread awareness of Lyme Disease. I have never had the opportunity to meet Dr. Jemsek, Dr. Jones or Dr. Jaller, but that doesn't mean their plight is any less important.  I also urge you to support each other.  We are all under fire all the time.  Skeptics are always out there.  Share this blog link with your friends.**  We should speak together now and I encourage us to speak louder than ever.  Our doctors should know they can count on our continued support and our Lyme friends* need to know that we all have their backs.  We need each other because there is strength in numbers.

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

*I would like to personally thank all of my Lyme friends that had a hand in helping me in researching and proofreading this article. Thank you so much for your dedication to the Lyme community.

** When you share this link on your blog, let me know via comment so I can visit yours.  :o}

*** This was posted on Lyme Aware:

IV Day

I have a love hate relationship with IV days.  I hate having to get stuck (twice).  Today was a two stick kind of day.

However, I love the company.  I got there and met two new friends (everyone is a friend --- I know no strangers, just friends I haven't met yet).  I talked and talked the entire IV.  Usually I fall asleep around the 2 hour mark, but today --- because I haven't been able to be around any people over the last few weeks, I talked and talked and talked.  We all commiserated over our Lyme life.

I invited them all to the screening on Thursday.

I stayed and talked after my IV was through.  Today it took exactly 3 hours.  Usually it takes longer.  So I was pleased about that.  I know I was dehydrated because usually I have to go to the bathroom 3 or 4 times during my IV.  Today, I didn't have to go at all.  I only went once during the entire time I was there and that was about 30 minutes after I finished with the IV and I've only gone once since I've returned home.  That's what Zith does to me.

On another note ---

Tomorrow is going to be a crazy day.  First hanging out with Friend A, then going to the lawyers to sign for our house being sold and then hanging out with Friend B.  So pumped about tomorrow.  Then Thursday night, we have the screening for the documentary Under Our Skin.  Pumped about that too.  Very excited.  Then, Friday --- I start Mepron.  Scared, very scared.  Will live though.

Well, I'm tired.  I'm taking Zith and hitting the bed.

My friend Sarah

Mother's Day.  Where would we all be without our Mother's?  I have some friends that will be going through their first Mother's Day without their Moms.  Please think of them as this day will be tough for them.  I'm thinking of my friend Jaime, so if you guys could really pray for Jaime as she has really really had a tough go of it lately, she would REALLY appreciate it.

My Mom.  Whoever would I be without my Mom?  I am 1/4 part of my Mom, 1/4 part of my Dad and then I'm myself.  I think as we get older the part of ourselves get to be a bigger percentage, but the things we like -- the things we don't like --- I think they are all molded by our Mom's.

Rob & I were walking in a furniture store looking at bar stools for our kitchen counter.  For the first time in my adult life, we'll have a kitchen counter that allows for bar stools.  Well, I am trying to find --- tall swirly bar stools.  Rob says that we might have to give up our search for swivel and we might have to just get plain ole stools.  Well while I may have to settle, I *really* want bar stools that I can sit up high and swirl in!  It takes me back to my youth when I crawled up into my Granny's bar stools and swirled.  So I would *really* like to get some.  I have them in my head, but the only ones we have found are so expensive that there is no way we will be getting them anytime soon so we'll wait until we find the ones we either settle on or have the money to buy.

Speaking of youth and money ---  (like that segway?)

I want to tell you a little more about my friend Sarah and her MOTHER --

Sarah and I have been friends since almost the beginning of my Lyme Diagnosis. She was 16 or 17 when we "MET" online.  Sarah has Lyme Disease.  As if that isn't bad enough, the ticks have given her Babesia and Bartonella.  As if that weren't enough, let's throw into the mix several other diseases. She has Hashimoto's Thryoid Disease, Tachybrady-Cardia, POTS syndrome, Gastroparesis, Poly-neuropathy, degernative disk disorder, nerve damage to the vagus nerve and also Chiari Malformation. 

She has constant pain and is non-responsive to pain medicine.  She gets no relief from her symptoms.  She has severe chronic fatigue and severe insomnia.  She has seizures, tremors, muscle spasm, memory loss, brain fog, dyslexia, fevers, migraines, severe light sensitivity, sound & vibration sensitivity, temporary paralysis in lower extremities. 

Sarah is a strong warrior and so is her Mom. Sarah wanted to move out on her own when she became an adult and her Mom let her.  That is strength to let your child, one who is very sick, move out on her own when everything inside of you is screaming to not let her leave.  Sarah has an amazing outlook on life considering everything she's been through.  She wants everyone to pray for OTHER people. She wants others to receive healing, relief and understanding. In 2009, she told me, "So to all my fellow Lymies, Keep fighting, for you are all stronger than you know! You all inspire me in your own way, and I thank you for making me laugh when I wanted to cry, and complaining with me when I needed to vent. :)"

Yesterday I posted a link to her surgery fund. This surgery is to help her with her Chiari Malformation symptoms. If I'm not mistaken, Chiari Malformation is something that people are born with, but it was only diagnosed in 2009.  This surgery for Sarah is hopeful to be a life changing event.  Sarah and her Mom must drive to Colorado from South Carolina. Sarah can no longer fly due to her seizures.  They must rent a van and stay in Colorado for a month while she has this surgery.  Her surgery is scheduled to take place at the end of June.





Sarah will be having something called Decompression Surgery.  This is where they will remove the bottom part of the back of her skull and the doctors will press her brain back up into her head.  If this line just made you say "OW,"  please consider donating two things. First, please donate your prayers.  This is quite a serious surgery.  Not to mention, for them to have a safe drive, etc.    Sarah and her Mom will have to pay out of pocket expenses related to this surgery.  Please help them by donating for Sarah's Chiari Surgery.  Please help her alleviate some of the pain she has on a daily basis by helping them.  Thank you so much. 

Sarah shows everyone her love all of the time.  Now is the time for us to show her that we love her.  Thanks to everyone. 

http://www.giveforward.com/sarahschiarisurgery

Day 12 and personal request for a dear friend

On day 12 of Lyme Disease Awareness Month, I come to you with a different agenda.  This agenda is to help a great friend of mine.  We met through circumstances of Lyme Disease.  Although we hate we have the disease, we love that it has meshed our lives together and we will be life long friends.  

My friend --- Sarah --- I've mentioned her before when I went to her High School Graduation.   When I first "met" Sarah, it was in a huge Face Book Lyme Group.  She began to talk to me and she was quite young so I asked her to get her Mom's permission before talking with me.  Her Mom was thrilled because I was giving her nutritional recommendations and suggestions what things to try to eat.  We became fast friends and when we visited her in South Carolina her family welcomed us with open arms and we became friends for life.  

Sarah has been sick for some time, not only with Lyme, but she was born with Chiari Malformation.  Sarah has been having a lot of complications and in order to help her a surgeon wants her to go all the way from South Carolina to Colorado to have an operation.  She must stay in Colorado for a month.  She never asks for anything, but she needs our help and a friend of ours has set up a fundraiser for Sarah so that she can have this much needed operation.  

Donate if you can, but also please pass the word about my friend to others so they can have the opportunity to donate to my precious friend Sarah.  Sarah, I love you girl

http://www.giveforward.com/sarahschiarisurgery

Day 11 LDA Month

http://www.youtube.com/watch?v=BkBhPSMNPzE&feature=relmfu

This is the 2nd part of Michelle On Lyme.  Thank you for watching these videos.

Remember to go further down to read my blog on Discrimination and Prejudice.

May 10, 2012

There are days where I hate to write something new because I don't want my previous post to be pushed down.  So I'm keeping this short.  Please read my post on discrimination and prejudice under this one.

Day 10 of Lyme Disease Awareness Month:

Michelle -- a Lyme patient did a two part video a while ago.   Here is part one. It's been a while since I've watched these two videos, but I remember I enjoyed them. I hope you do too.  

 http://youtu.be/Lmq-y6EU4AE

Discrimination & Prejudice

I want to share with you all a video that a Lyme patient created first before I go onto my non-lyme portion of the blog post.   It's a 4 or 5 minute video that describes some of the things we go through. 

 http://youtu.be/cCB6ezBzSMY


I write this hesitantly because I know my family reads my blog, but this has been on my heart for a few weeks and I feel that I must write it.  To my family.  I think the way I think because you raised me to be a caring compassionate woman.  You taught me to get to know people before dismissing them based on assumptions and status.  You taught me how to love like God loves, without condition.  

Discrimination is a huge word. Prejudice is another huge word.  These words have been talked about ad-nausea over the last few months in North Carolina. Discrimination is when "we" give a certain treatment to someone based on their membership or perceived membership in a certain group or category.  I have been affected by discrimination, me personally.  Discrimination hurts.

You might think to yourself that there is no way that I've been treated poorly based on my membership of a  certain group, but it is true.  In fact, you thinking what you just thought ... is prejudice.  How could this white girl have been pre-judged? In more ways than you think ---- 

One of my best friends in elementary school was a girl. We had different color skin.  I didn't notice because Edna was my friend, my best friend.  I changed schools in elementary for two years and people convinced her that I attended that private Christian school because I was prejudice against her.  It most certainly wasn't the case because I didn't even realize we were different.  I went to a different school becuase my family thought it would be a better learning environment for our family.  These people at the new school were prejudice against me for coming from a public school.  However, I did make a few life long friends.  Some I haven't seen since I moved away and oh I how I miss them.  Oh how I missed her, my best friend.   I didn't talk to her for years (decades actually).  I recently reconnected with her on facebook and found out that not only did her family tell her that I didn't like people of her race, but that we had moved far away because of it.  I was heart broken that she would have been told such a thing.  She was heartbroken that they had lied to her.  She said I was the best friend she had ever had and would never forget that I was her very first best friend in life. 

Discrimination.  Prejudice.

Right before 7th grade began, we moved to a new county.  I was discriminated against for being the new girl in school.   I was discriminated against for having parents that worked in the school system.  I was discriminated against for wearing glasses, being too skinny, for being in the band, for being different and for being smart. The students in my school prejudged me before they got to know me. Their prejudice hurt.  I cried daily.  I wanted nothing more than to be accepted for who I was and to have friends.  I wanted nothing more than to go back "home" to be with the friends that I had grown to love. 


Discrimination.  Prejudice.

In college and in my adulthood, I have been discriminated against in the medical community.  They've called me a number of things and have lumped me in with a group of people that are crazy.  Twelve years after my first symptom, I was finally diagnosed correctly.  There is still a prejudice in the medical community about Lyme Disease.  People are either FOR it or AGAINST it.  I am FOR the treatment of Lyme and AGAINST the IDSA guidelines.  I am a competent woman that gets looked at like she's incompetent when regular physicians find out I'm seeking the help of an integrative doctor for Lyme Disease.  


Discrimination.  Prejudice.

I have friends of all types.  I have always been like this.  In high school, I had friends of a wide range.  I had shy quiet very smart friends and I had very outgoing friends who in hind sight were probably drug addicts.  I had friends that were raised in homes of loving single Mothers, had friends that were raised in a not so loving home of two parents, had friends that were raised by their grandparents, had friends that were raised in a traditional home.

Discrimination.  Prejudice.


In hindsight, I know I had friends that were gay in High School.  In regular sight, I knew I had friends that were gay in college. This portion of my blog may not come out correctly and I may confuse or anger some , but it is what it is. 
 
I do not believe in abortion.  I believe it is wrong.  I believe that life begins at conception and killing that life is a sin.   However, I also believe that I should not judge that in which I don't understand. I shouldn't judge or tell someone else what they should or should not do based on my own very personal opinions and biases. I do understand that there are certain circumstances in which a woman thinks there are no other choices including rape victims and a pregnancy in which it may endanger the life of the mother or the child.  However when I look at the life of my friend's 4 year old daughter in which the pregnancy could have ended the life of my friend and the life of that daughter --- I know she made the right decision because she and her husband believe what I believe -- the sanctity of life -- even after her doctors told her that an abortion was the best way to save her life.  Even with all of this, I feel that women should be given a choice.  I have the choice to feel the way I do and I feel that other women have the same right to choose another option even if that option is wrong to me.

It wasn't until I got to college that I realized (yes I was very naive) that sometimes life worked a little differently than in my family.  For the first time in my life, I was introduced to men that loved other men.  I was introduced to women that loved other women.  I'll be honest.  It confused the mess out of me, but as I went back to my teachings and my upbringings I remembered one of my favorite children's songs ----

Jesus loves the little children,
All the children of the world.
Red and yellow, black and white,
All are precious in His sight,
Jesus loves the little children of the world.

We are ALL God's children.
We are ALL loved by God.
 Last time I checked. ALL meant ALL.
 It is not my place to judge that in which I don't understand.
It is not my place to discriminate.

Last time I check, God  made us all. He knew what we were going to be before we did.  He knew about my Lyme Disease, well before I did. He knew that I would be an advocate for Lyme before I did. He knew that I would find it in my heart to pour out these words to all of you before I did!  God created us ALL.  Every single one of us. 

There, I've said my peace on discrimination, prejudice, abortion, homosexuality, etc. It was an honest account of how I have been feeling over the last few weeks.   Please pray for my friends, my friends that have been deeply hurt this morning based on how our state voted yesterday whether it was for or against the amendment or just the primary election in general.  Friends, families and children are hurting this morning over discrimination and prejudice.   

Thank you for reading the words from my heart. 


 

8th day of LDA Month

 We are packing, packing, packing.  In 10 days, we will be signing for our new home.  On the 18th, I will sign for us and will begin moving boxes on my own to the new house.  My husband will get home around 6pm so I'm sure we'll move some on the night of the 18th.  However, our big plans are to move everything out of the house and into our new home on the 19th.  It seems strange that we're about into the single digits!  Our house is a wreck.  I can't find anything. 

Now onto Lyme Disease Awareness Month.

Sarah Buchman is a 3rd year medical student at Georgetown University.  She decided to write her thesis on the research she did on the Economic Implications of Lyme Disease. She presented a summary of her works at the ILADS conference. I really enjoyed this little bit of video so I thought I would share it with you all on the 8th day of Lyme Disease Awareness Month. 

http://youtu.be/GIiTYAvylyU 

 

Day 7 of Lyme Disease Awareness Month

Personal Story on friendship and Lyme and then onto the video:

Yesterday I spent the day with one of my closest friends and his family on his birthday.   Lyme has taught me a number of things.  I can roll of information about Lyme Disease and Ticks in a moment's notice.  I don't have to think about it anymore. It is just ingrained.  There is one small thing that Lyme taught me.  If I could take Lyme away and never have had it in the first place, if that meant not learning this one thing ... I wouldn't do it.  I wouldn't give it back.  I would take this journey all over again as long as I learned this one thing. 

Lyme Disease is very tough on friendships. I've lost some friends along the journey of Lyme. It is just what it is.  However, you know how you have friends that you don't realize how special they are until they do something to step it up?  Something unthinkable.  Well this post is about how a friendship like that came to be.  We were merely acquaintances in middle and high school until he stepped it up when I needed it. It had nothing to do with Lyme Disease or health issues. I didn't even know I needed it, but he stepped it up.  Ever since, we were tight friends.  When we both went to college, we emailed a lot.  He became my sounding board.  When I was going through unbelievable trials and tribulations, he listened.  I didn't want suggestions. I just wanted someone to listen.  And listen he did.

When I finally got diagnosed with Lyme, he was one of the first friends I told.  He rejoiced with me in the fact that the unknown was finally known.  He shared my sorrow in the fact that the journey would be a long one.  I shared my concern that I would lose all of my friends and he made me a promise that our friendship would remain strong and intact no matter what I experienced.  I am blessed by the way with some of the best friends ever --- Lyme has made those bonds stronger. 

When I was undergoing the most experimental and controversial of treatments, he didn't criticize my choices. He didn't question the doctor's choices.  He just listened and when I had run out of ride home options --- he offered to pick me up after a treatment.  After those treatments, it wasn't pretty.  I did not like people to see me like that.  It was difficult to walk.  It was difficult to talk.  The muscles in my mouth didn't work properly after a treatment and it was difficult to swallow my own saliva.  And each treatment was slightly different in end results, but I needed rides to the treatment and home from the treatment. 

I did not want a "friend" to see me "like that."  My husband was my main "escort."  He carried me to the treatment always and most of the time he picked me up to carry me home.  However, we needed help.  So I called on my immediate family.  One week, they couldn't help and I thought I was going to have to stay at the doctor's office until night.  I was "woah is me-ing" to this friend and he said, "I can pick you up if you need."  I was shocked and had to decide if seeing me like that was something he could handle and allowing a friend to see me like that was something I could handle. 

I confided in him the things he might possibly see and asked if he could handle it.  I trusted him when he said he could handle it.  Leave it to me to have the worst reaction ever on the day he had to pick me up.  He literally had to carry me to his car, carry me into my home and as I stumbled to try to make it on my own, he picked me up and put me in my own bed.  I don't remember much from this day, but I remember thinking how very blessed I was to have a friend that would be willing to literally pick me up from treatment.    I was terrified that I would never see him again after he saw me limply laying there looking like that with a mouth full of saliva rolling down my cheek, hitting my chin and drenching my shirt, but that moment brought us closer together as friends. 

 Like I said, if it meant that I wouldn't learn this one simple thing, I would not take this journey back.   I would do it all over again. 


 Now onto the Advocacy part of my blog post.

Advocating Lyme One Blog Post at a Time.

We are one week into Lyme Disease Awareness Month. This is the 7th post about Lyme Disease in the month.  I found a video created by a woman that includes 7 Lyme facts that could have improved her health.  If she had known these things, she wouldn't be as sick as she is now.  She created it for you to learn to help prevent others from getting as sick as she has.

There was only one part I truly was conflicted on.  It was regarding the use of Tom Tick Twister.  I have no personal experience with this tick removal tool, but I've always been told to avoid twisting a tick upon removal. I don't know how this tool works, but it appears that it's twisting around the tick.  I personally prefer fine point tweezers or the Pro Tick Remedy.

I hope you enjoy the video.

http://youtu.be/4ALgOikmjCw

Lyme Awareness Day 6

Today is the 6th day of Lyme Awareness.

BTW: I was right.  Yesterday at the wedding I was asked about Lyme Disease.  PS.  Before we move on to the Lyme advocacy portion, I would like to make mention of the wedding I attended yesterday.

Yesterday was a monumental day.  It was the day where a boy became a man.  Like a tick, I attach myself to people.  Many many years ago, I attached myself to a friend. This friend and I were friends from the first moment we met. I met her on the first day of a new job.  We hit it off right away.  Because of our job (we worked in retail), her family would often come into the store to shop.  That included her "little" brother Jon.

I mean this in the best possible way, but Jon was the "cockiest" kid I knew.  He was good looking and he knew it. Many years later, I saw "little" Jon at an event and this cocky little boy had turned into a cocky young man.   I guess instead of saying cocky, I should say charismatic with a twist.  I see the family at weddings and funerals.  Occasionally when Val comes home from where she lives, I'll hang out with the family at her parent's house.  After one such occasion, Val was busy running around and Jon and I had the chance to catch up.

He seemed finally ready to grow up and turn into a man.  We talked, a lot.  In the end, I told him love would bite him in the rear when he least expected it.  It could be in 5 minutes, 5 days, 5 weeks, 5 years, but that at some point some woman would walk into his lives and they wouldn't be able to live without each other.  I gagged at my own sappiness and he just kept saying, "Yeah right."

Well wouldn't you know it wasn't too much longer when on his FB page there was a status update that said, "Man Down."  Then shortly after that ---- his relationship status changed.  Folks, this was in August of 2011.  Don't you know in October, he proposed to this woman and yesterday they got married in a beautiful chapel.

Now, I have been to many weddings and in that time I have never been to a wedding where the groom was so infatuated with his bride.  The pastor and Jon came out from the side room.  He looked out and saw his mama and winked at her.  I thought, "That is so Jon."  He made contact with several people (I'm assuming women ... just because I know how he is) and he winked at them too.  As the bridesmaids came down the aisle, the winking continued. And then a friend began to sing "Marry Me" by Train.  Jon's bride and future father in law came walking in.

I have never seen a more beautiful bridal gown.  She looked confident and on the verge of tears.  I looked at Jon and a single tear fell down my cheek.  This was the day my little boy friend had turned into a man.  From the moment she walked down the aisle, he couldn't keep his eyes off her.  During different musical interludes, they were chatty Kathy's with her grinning like the Cheshire cat and him talking back to her.  I couldn't be prouder of my little buddy and his new wife. 


Now that I've made you all a little teary eyed like I was yesterday ----

Now onto advocacy.
Taken straight from the TBDA website:


"Dynamic, inclusive and passionate, the Tick-Borne Disease Alliance (TBDA) is dedicated to raising awareness, supporting research and promoting advocacy to find a cure for tick-borne diseases, including Lyme.

Mindful of the urgency of this escalating public health crisis, Turn the Corner Foundation, co-founded by Staci Grodin, and the Tick-Borne Disease Initiative, founded by David Roth, decided to consolidate their efforts in the fight for a cure.

In early 2012, they joined forces to form a new, national organization—the TBDA. As part of our efforts to raise funds to support much-needed research, TBDA will embark on a quest to develop a diagnostic tool as a first step toward eradicating the diseases.

Working with others in the tick-borne disease community nationwide, TBDA seeks to raise public awareness through education and create a unified voice for advocacy regarding the current epidemic in order to make a real difference Please join us. By working together, we can help eliminate tick-borne diseases for future generations." (http://tbdalliance.org/about-tbda)

Please visit their website to see Tick Talk Tips.  They have 19 tick tips.  Read them carefully.

http://tbdalliance.org/getinformed/tick-talk/91-tick-talk-tips

Cinco de Lymo - the one about teasing

Today is the 5th day of Lyme Awareness Month. The other day I said that I feel like I am in Lyme Tyme Land all of the time.  I eat, breathe, sleep, talk, email, facebook, blog Lyme Disease.  It's Lyme Tyme all the time.

Today, I'm going to a wedding.  I bet I'll get asked at least once while I'm there about Lyme Disease.  I'm the Lyme Lady!  People sometimes make fun of me either straight to my face of behind my back because I carry information with me about Lyme all the time.  But in the end, I'm the first one they call to ask a tick related question.  I'm the first one they think about when someone they know or loves gets diagnosed with Lyme Disease.  I'm the first one they think about when someone they know or loves finds a tick on themselves in the middle of the night.  I'm the first one they want to talk to because they know I'll know the answer.

Yesterday a friend from work called. This friend does not make fun of me.  This friend has watched the documentary Under Our Skin.  This friend found a tick on her significant other's back and knew enough from me to remove the tick carefully and clean her SO's back thoroughly.  Then, the next day she sent me a message asking me to call her.  I did.  She described the tick.  I calmly told her it was more than likely a Lone Star tick, which are popular in NC.  I reminded her of the tick removal procedures and some of the symptoms he should watch out for over the next few days.  I encouraged her to take him to the doctor, but also don't want to cause panic.  He has an appointment anyways on Monday so they should bring up the tick bite and any unusual symptoms.  I told her about the tick having numbing agents.  These are things that just rolled right off my tongue and I didn't have to think twice about any of them.

However, thanks to Lyme Disease Association --- I have a handy dandy tick card.  I will share with you that website later in the month.  But, I wanted you to know that ... while we may made fun of for being in Lyme Tyme Land all the time --- we are the first one you think of when you find a tick.  And if being made fun of for a few minutes because I carry these cards all the time is the price I have to pay to help you in your time of need and to save you a life time of illness --- then it is well worth it.  Keep on teasing.  Keep on making fun.  I'll take it.  And then when you need somebody, you need somebody that knows what you need to know, call me.  I'll answer your questions and then when I get off the phone --- I will breathe a sign of relief that your teasing caused you to remember the person to call in  your time of need and then pray for you or your family member that the tick that got you won't be as bad as the tick that got me.

Thanks for reading.  

**** Now onto today's scheduled post:

Dr. Jemsek is one of the world's renowned LLMD (lyme literate medical doctor).  Here is his speech in which he "speaks the truth" about Lyme Disease at the "In the Light Lyme Disease Gala in Charlotte NC.  Before Lyme became endemic in the area, he was a specialist (and still is) in HIV/AIDS. He may have been the first ot recognize HIV/AIDS in NC and then LYME Disease.  Since he was "evicted" from his medical practice in Charlotte, he moved to South Carolina.  He was "asked to leave" and he now has a practice in DC where he treats Lyme patients from all over the world.  Please take the time to listen to Dr. J speak the truth. Dr. J discusses the controversy surrounding Lyme Disease and what action needs to be taken to provide patients with better care.  He compares Lyme to HIV/AIDS.  He talks about doctors that quit on patients.

http://youtu.be/V-lHDA863TM

Day 4 of Lyme Disease Awareness Month

It is the fourth day of Lyme Disease Awareness Month.

I forget that there are many acronyms that we use daily that we don't even have to think about, but that those without Lyme or newly Lyme diagnosed won't know.   Some of those are LLMD, ILADS and IDSA

LLMD stands for Lyme Literate Medical Doctor.

There are two kinds of doctors that "treat" Lyme.  Some are IDSA and some are ILADS.  In essence, IDSA doctors don't know the truth about Lyme.  ILADS are Lyme gurus that know about Lyme and co-infections (ticks give other things than just Lyme).  So if you go see a doctor, you want to make sure that they are ILADS affiliated.

ILADS - International Lyme and Associated Diseases Society

IDSA - I like to "pretend" that it stands for I DON'T SEE ANYTHING or I DON'T SAY ANYTHING, but it  actually stands for Infectious Diseases Society of America.

The reason I'm sharing all of these acronyms with you is because I wanted to share with you a video from the most recent ILADS conference where LLMD Dr. Horowitz spoke on a co-infection (one of the other things that Ticks can give) Babesia (also known as Babesiosis).  Dr. Horowitz is a top notice Integrative LLMD.  He is PRO Lyme Treatment is in one of the best in the nation for treating Lyme Disease.  The video is about 11 minutes long and starts off with someone introducing Dr. H.  Dr. H speaks french for the first minute or so, but then switches to English.

I hope you enjoy the video and I hope you find it educational.

http://youtu.be/fRBXpOPMxNE

Day Three Lyme Awareness

https://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/lyme-resource-educators.shtml

So, you've seen tick removal tips and the HULU Under Our Skin. 

Next up a video from 1992! 

Things have changed since 1992, but it is sad that in 1992 they knew as much as they knew in 2007 when I got diagnosed.  The biggest part that I had trouble with in the video were regarding transmission (how long the tick is attached and whether it is transmitted in another way other than an infected tick) and to flush the tick down the toilet. 

Lyme Prevention

Yesterday, I shared with everyone how to view Under Our Skin on Hulu. 

Today, I want to share with you important information regarding tick removal.

It is important to take the necessary precautions to help prevent any tick borne illnesses by using small pointy tweezers and grasping the tick as close to the head as possible and pulling straight out without yanking. It is always a good idea to keep handy a tick kit including small pointy tweezers preferably with attached magnifier, non-latex gloves, small pencil, alcohol prep pads, zip lock bags, tick identification and removal information card.

1. It is important not to touch the tick when removing it so avoid handling ticks with uncovered fingers. Use tweezers designed for removal. If you absolutely must use your hands, protect your fingers with non-latex gloves, plastic or even a paper towel.

2. Take the tweezers and place them around the area where the mouth of the tick enter the skin.

3. Using a slow steady motion, pull the tick away from the skin. Be careful not to jerk, crush, squeeze or puncture the tick.

4. After you remove the tick, place it directly into a Ziploc bag or other sealable container. Wash the area around the site of the bite with soap and water. Use an alcohol pad to disinfect it even further.

5. If possible, keep the tick alive for a month in case symptoms of a tick borne illness develop. Place the tick in a labeled, sealed bag with a lightly moistened paper towel. Label the bag with the date of the bite and the patient. For your own protection, tape around the Ziploc part of the bag to prevent the tick from exiting the bag.

It is important NOT to flush the tick down the toilet.  Some people suggest to do this, but ticks can survive a good flush AND the water.  If you want, you can send the tick to IgeneX for a Tick Test.   It's about 300 bucks for them to test 5 different diseases, but keep in mind that they only test for one strain and each disease may have  hundreds of strains. So even if your tick comes back free and clear from disease, it may not be. 

There is controversy about how long ticks need to be attached for transmission.  *most* sources say that it takes at least 24 hours of attachment to transmit a disease.  However at the last ILADS conference, they talked about a research study they had done with a Lyme infected tick and a mouse. They injected radioactive die into the bacteria and then the tick attached to the mouse.  Within some amount of time, the bacteria had already left the blood and crossed the blood brain barrier. It was something ridiculous like 30 minutes.

A Lyme Lunch

So the past few weeks, I have been planning a Lyme Lunch. So far there are about 13 of us going and 13 that can't go and about 21 that haven't decided if they can go or not. I am so excited that I can't stand it! Of the 13 that are definitely going, I have most of them at least once. There are several on the "might" list that I have never met.

So excited to get together with all my Lyme friends and talk about the possibility of hosting a screening in each of their counties. I hope the restaurant is ready for a whole slew of us Lymies in about 2 weeks. :}

What Lyme gave to me

So I was telling a good friend this story and she was absolutely blown away. It was after thinking about what she had said that I realized that Lyme Disease gave me a truly wonderful gift.

Prior to my Lyme Diagnosis, I was terribly shy. And when I say shy, I mean sometimes if I had to talk in front of people or to new people ... I would literally get sick afterward. Now one would think that because I was in the band, colorguard, winterguard, and a dancer that there was no way I could feel that way, but truth be told ... when I was participating in those items I was portraying a character. I wasn't me.

As soon as I stepped onto the football field, I was a different person. Ask me about Guard and I could have talked for hours. If you knew me back then, you may not have realized I was shy because well ... you KNEW me. The trouble was getting to know me. My best friend has always said that if people would just get to know me then they'd love me. The trouble was letting them in to get to know me. Some people just had the gift to get right inside my heart and others I put up this wall.

Then I was diagnosed with Lyme. Friends left. I felt an overwhelming sadness. People I knew a lot of my life were disappearing like flies. I figured they just couldn't handle. What's odd is that they handled things just fine when it was undiagnosed and I just had symptoms, but once the doctor put a name on it ... they just vanished.

I started a small group with a few of my Lyme friends that live in North & South Carolina back in the last part of 07. It was my friend Sarah (that I went to the HS graduation a couple of years ago) in South Carolina & I that were discussing the possibility of a small group. We talked back & forth on the computer and created a great name for our group (I don't want to say b.c I don't want it to be inundated with new requests from people). Sarah drew something up and my friend Missy graphically designed it so that we would have a beautiful logo.

A couple of weeks in, we had about 8 friends. Our close online buddies that we talked to daily. I never imagined that it would grow to be more than 15. Soon we got our first request for someone we had never spoken to. We knew that we had to keep our small group safe so I created a small survey to send to the people that asked to join us (especially for those that we did not know or someone in the group could not vouch for!). As I go to different Lyme events, I find out if they are on FB. As I become friends with them, I add them to the group. Now we are almost at 50 members.

You may ask, how does this get back to what Lyme gave to you? Well, I have friends online that understand exactly what I've been through. In reverse, I can understand exactly what they are going through. We are friends. It's simple as that. We are advocates for Lyme Disease. Some of them have transitioned from "My Lyme friend" just to "My friend." You may remember when I went to the NC Lyme Walk and met several Lymies. I'm not very close online friends with several of them. I had no problems talking with them and I didn't even feel a tinge of nausea of meeting them and talking with them. This is just a pure gift of Lyme.

The story that made my friend go "What? seriously? You did that?" Well during the week I had been talking with two online friends. Whitney (my friend that had the benefit raffle and the articles in the paper) & Sarah J. We decided that we would get together at Whitney's house and hang out for the morning. Whitney & I had never met Sarah, but thought it would be safe for us to meet at Whitney's house (we've all been talking for sometime). Well Friday morning Whitney's Mom called and told me that she wasn't feeling well. That we should postpone our fun morning. (and by Fun I mean, sitting there complaining about Lyme Disease and planning our first advocacy event). So I called Sarah J and left a message. I thought we wouldn't meet and started heading home.

She called me back and I mentioned that maybe we could meet anyways. So I plugged in a new address to the GPS and off I went. So yes, I drove to a mall (one that I rarely go to) and met with someone I've never met with before and it was as if we were old friends hanging out. Crazy. It was exactly that way when I met Whitney the first time. Now granted all these people I have been talking to online for sometime so it's not exactly like they are new people, but still.

I just realized the other day that I have now met 15 of the 47 Lyme people in our small community. That's amazing! I'm in the beginning stages of planning an event for all of us (like maybe a Saturday luncheon somewhere to plan for how we can improve the knowledge of Lyme Disease in North Carolina). So excited!

Lyme Walk 2011 in NC

Read this Article in the paper regarding the walk I went to on Saturday morning. This article will give you the details about why the walk was being held in the little town of Albemarle North Carolina. Now onto my story.

Prior to my Lyme friend Whitney's benefit raffle, I was invited to this gathering a little over two hours from my home. I thought it would be fun to go, but wrestled with the thought of actually going. I always enjoy hanging out with fellow Lyme patients, but there are several reasons why I thought I wouldn't go. The thought process went something like this:

1. I'm going to spend over 4 1/2 hours in the car.

2. I don't think I'll know anyone there.

3. AND It's going to be OVER 100 DEGREES OUTSIDE!!!!

4. I could easily get sunburned or bit by another tick.

There were however three reasons why I thought that I should go.

1. I knew that I would know Wendy & Brenda from online and that I would have a great time with everyone once I arrived.

2. My ability to advise those that are just starting their Lyme journey or those that knew nothing about the disease.

3. I would be capable of capturing magnificent snapshots of moments.

So after convincing my husband that we should go (despite the HEAT that kept hot dogs warm long after they were cooked!), we went to the store and picked up bottles of Gatorade and water. We purchased three huge bags of ice. Yesterday morning we got up at 5am sharp and packed our car with the cooler full of ice with our drinks, sunscreen, bug spray and our awesome Olympus E-620 SLR camera with extra flash!

Well the drive there was pretty boring. However, I must say "YOU might be in the middle of nowhere IF you see a lady on the side of the road having a little mini yard sale on the hood of her car right near a horse & buggy caution sign." We were right smack dab in the middle of no where. We arrived around 8:20 and I generously applied both sunscreen & bug spray to my skin.

I took a walk over to all the Lyme Clad ladies & gentlemen and threw myself right smack dab in the conversation. Now I am telling you, Lyme has given me many problems. However, it also gave me a huge advantage. Five years ago, there is no way I would have walked into a place with several dozen strangers and felt comfortable enough just to be myself. No way, no how.

Shortly after arriving, I began snapping photos. I took almost four hours worth of photos. I took well over 300 photographs. I won't share them all, but to me these photos are priceless.

Lyme Disease Awareness Board: There were many brochures on Lyme to share with those that participated in the walk.


Tick Remover Tools provided by IgeneX.


Presents for the Lymies. Brenda & Wendy were kind enough to make up packages for those of us in attendance that had Lyme. So very sweet.


Holly presenting the Lyme Awareness shirts.


Ernie & Brenda talking about Lyme Disease.


Lyme Bracelet from May Day


ILADS bag.


Two Lymies sharing a moment.


Brenda counting funds raised.


My new Lyme friend & me.


So the biggest thing that happened was that I got to talk to a young lady I haven't connected with before online. She was the sweetest thing ever. I talked with her and her Dad at length. They got to take home the documentary Under Our Skin. The amazing thing is that I'm more than twice her age! In fact, I'm twice her age plus 3!

What an amazing day.